None of us know if Charlie Gard's mum and dad are right or wrong but when it comes to a child's life and death the final decision must be with the parents. Because they are the ones who have to live forever with consequences

Baby Charlie Gard may be tiny. At just ten months old, suffering from a rare genetic condition and acutely brain damaged, he cannot breathe for himself, see, or swallow.

Of course, he cannot talk either. It's quite possible he will never utter a single word. And yet his voice is huge. Charlie Gard, blind, utterly dependent, acutely sick, has half the world holding their breath just to make sure he takes hear his next.

At times it feels as if we are all listening, like parents hovering over a baby monitor, watching for the flicker of lights across the little screen, for the sound of soft cries or sleepy snuffling.

Charlie Gard's parents, Connie and Chris, are just like the rest of us, normal parents hoping for a healthy baby, doing all the right things

I used to love that sound. Another funny little me, but smaller and softer and much better, tucked up safe upstairs.

We all feel connected to little Charlie Gard.

And that's the truth of this terrible decision. The reason we are drawn to baby Charlie and his plight is that he is all of us, every good mum and every decent dad. Charlie is the decision we dread, the test we avoid because we don't know what we'd do with the answer. He is all the choices we are grateful we've never been forced to make.

A few of us have been somewhere near the hell of a sick child, and glimpsed into the abyss. A few are actually down in its depths, trying to find a way out. I walk past them on the pavement around the corner from the National Hospital for Neurology.

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And every time I kick myself and tell myself to be more grateful. To remember I am lucky. We can never tell ourselves that enough until the day something is wrong and we reflect how perfect life used to be.

Opinions on what is right for Charlie are bitterly divided. But I think we can agree, we wouldn't wish this situation on our worst enemy.

Charlie's parents, Connie and Chris, are just like the rest of us, normal parents hoping for a healthy baby, doing all the right things. Preparing a place for him at home, with a little wardrobe of clothes for him to grow into, a cute little cot all cosy and clean with soft sheets and cuddly things.

A cot he has never slept in.

The reason we are drawn to baby Charlie and his plight is that he is all of us, every good mum and every decent dad

They have been devastated by the cruelty of chance, a cruelty that many of us will never know, not because we are better, or more clever, or more smart, or tried harder, or ate less blue cheese, or more fruit, but because genetics is a game in a casino and the master croupier has no heart.

Just like any good parents, Chris and Connie have fought for their son. Fought for hope, of course, for a chance at life. And then, towards the end, fought for the best death – at home in the cot he has never snuggled into.

They've also fought to not have to say goodbye, dreading the sadness of parting so much that fighting is a better option – better than allowing the pain to wash over you and sweep you away, far out to sea.

When I left my home for surgery that could go either way, I didn't say goodbye to my children. I didn't have the courage. Or the heart.

I could not say goodbye to my mum either, in case it turned out to be true. We passed silently in the garden, not stopping, avoiding the bigness of it all.

We have wondered, collectively, what is 'right for Charlie'. I wonder too whether what is right for the baby might be very different to what instinctively feels right for the parents. I don't think these two things are necessarily neatly aligned.

The Gards argue that Charlie has a right to seek help and, because he is their child, the decision should rest with them. The doctors argue that the treatment would not cure Charlie, it would only be a preservation of a 'state of existence', and so more compassionate to turn to end-of-life care.

The Gards argue that Charlie has a right to seek help and, because he is their child, the decision should rest with them

Medicine can be a cruel master. The terminology and the language, led by the head, is at odds with our sense of humanity, which is led by the heart.

To hear someone talk of your little baby and a 'state of existence' is vinegar in a wound. It is the worst paradox of them all, open prison, deafening silence, baby existence. Imagine someone standing in a suit looking at your soft, sweet, most precious thing and talking about a state of existence. The clinical and the emotional are oil on water.

We have grown to believe we are invincible. That medicine can cure everything, that we can outsmart even the most cunning disorder.

We are wrong. We are human. And without Great Ormond Street Hospital (GOSH) Charlie's parents would not have had these ten months with their child.

Many of those around me say the kindest thing would be to let him slip away with dignity. That it is cruel to keep him alive for a life not worth living.

And on one level I agree. I want to imagine faced with the same horror I would be brave enough to say goodbye for a final time. But my own experience tells me I am a coward and that may not be true.

Near the end of Charlie's time, before his death was postponed to allow his parents more time, his father Chris, 32, said: 'Our parental rights have been stripped away. We can't even take our own son home to die. We've been denied that. Our final wish if it all went against us was can we take our little boy home to die and we are not allowed.

'They even said no to a hospice.'

When the doctors say no, the courts say no, and the European Court of Human Rights refuses to intervene, Charlie's parents have a simple choice: fight or despair

It seems a cruelty too far. It seems unkind for some to suggest Charlie has only ever known life in hospital, so the hospital is his home. We never call a hospital our home, because that would mean we gave up on hope.

We choose to die in our own homes as a final act of independence, and to leave from the place that mattered most to us. Charlie's parents want to remember their son in death the way they planned to spend time with him in life. How can that be wrong?

And to those who criticise the parents for their anger at GOSH, or for their media appearances, or the videos emptying their hearts, or their fundraising – I get it. I can see how this all feels uncomfortably painful to watch. And that it feels very wrong for anyone to shout at the brilliant GOSH and all the staff who work there to save thousands of the most acutely sick kids.

But we forgive much more when the people we love are angry. The bad drunk, the children who scream they hate you for turning off their wifi, the mother who says something horribly unkind when angry. We forgive this behaviour that is driven by far less cause.

Fight and love is all the Gards have right now. When the doctors say no, the courts say no, and the European Court of Human Rights refuses to intervene – despite wading in so heroically to defend the human rights of immigrant rapists and terrorist baby-killers – Charlie's parents have a simple choice: fight or despair.

Perhaps fighting for Charlie, with the support of #charliesarmy, is a way of holding on to sanity. I would want to fight too, just to keep the dark wolf from my door. To face all that pain would be to face down a tsunami of black. No one would choose to drown without a fight.

And through their actions, little Charlie has made himself heard.

Doctors argue that the treatment would not cure Charlie, it would only be a preservation of a 'state of existence', and so more compassionate to turn to end-of-life care

Some are calling him to come to them, to come towards hope, towards a life, however it might start or end.

Donald Trump is one of them. Offering free treatment for Charlie in the United States if his parents wish for it, without pressure or judgement.

The treatment is, at best, experimental. The medical opinion here is that nothing can be done.

He has been much criticised, as ever, for interfering, for trying to have a say over the courts, for involving himself in the British debate, for offering free treatment when the cost must surely fall to American insurers.

But what if the fight for life is actually a fight for the principle of the right to life until the very end?

Trump is standing up for a Christian culture he is passionate about. He is not just President of the United States of America. He is rapidly evolving into a President of the Christian culture rooted in the American constitution. He said we will start saying 'Merry Christmas' again. He believes life is a gift from God, and therefore it is his duty to defend it.

In these difficult times with cultures set so fiercely in opposition with each other, I am hugely relieved to find him there in the White House as defender of the faith.

I'd argue none of us can say for sure what we would do until we have been there, in Charlie's parents shoes.

Charlie's parents still have hope. It may be futile, and their anger may be misplaced

I have been close; I was offered a termination for my own daughter at eight months pregnant because she had a genetic abnormality. Sitting there with my huge tummy distended from my ribs to the top of my knees, I was told my baby might be born with her kidneys outside her body, might live one hour, one day, one week, maybe more.

Only my sheer cowardice at the idea of losing the thing I loved so much already kept my unborn baby alive. The thought of giving birth but not taking home a baby was too terrible a thing to bear. Her little pink cot and her bunny - still on her bed all these years later - was waiting for her.

It was not a noble act. I am a fraud in comparison to Charlie's mum and dad. I could not have coped with a disabled child; I wasn't fighting for, I was running from. I was simply not brave enough to do the 'right thing', whatever that was.

My daughter is now 13. And just like any other child.

This does not make the doctors wrong. It makes me sure that, as a mother, running away from a decision that will being a tsunami of pain can be as right as fighting for chance, for a little more time, for hope.

Charlie's parents still have hope. It may be futile, and their anger may be misplaced.

I would love another baby to make my team six strong. But I will not, in case my baby was born disabled - changing all our lives, and not in the way I would have wished.

This is my truth. I would not want a disabled child. I am just not that good a mum. Not patient enough, not Christian enough, not selfless enough.

But in a confusing world where none of us know what is right for those parents or for that child, taking the decision away from the courts, the medical staff and the watching world is precisely the right thing to do.

Baby Charlie's life should be in his parents' hands. And his death, should it come, in their arms, too.